personal journey with lyme disease

Part 2 of The Pits September 25, 2013

Filed under: Uncategorized — iammorethanlyme @ 8:00 am

As I went off topic with my little rant, I did not tell you the kicker to the Lyme flare up.  The herniated disks in my lower back that I have kept in check for the past 15 years decided to let loose last Thursday.  They had been hinting that they were looking to cause trouble the past few weeks, but I kept them in check with my exercises.  It is always the most boring thing that triggers disks to bulge and, sure enough, I was just stepping into a pair of shorts.  I picked up my right foot and the spasm took my breath away.  Wait, wait, it will pass.  No such luck.  Tylenol and heat were the first things I did.  Somehow I got down on the ground and did my back stretches that I learned 15 years ago after facet blocks and a “boot camp” exercise program to strengthen my core and back.  Oh, yes, LYME did this to my disks and has caused degeneration in my cervical spine as well.

I waited 24 hours to call my doctor and found out the office was closed while they ramped up their computer systems.  I just wanted a note for physical therapy as I am well known where I go as they spent six months teaching me to walk on my own.  I called back and pressed “0” to speak with the answering service.  They took my information and said they would page my doctor.  My doctor has been incredible, but I did not hear from him at all Friday.  Did I call back?  Nope, I just rode it out through the weekend.

Monday morning, still in the same pain, I call and get his assistant.  She knows me well, too.  I explain that I am trying to get a note faxed for PT for my herniated disks.  I am not looking for pain meds.  She asks me the usual; “have he seen you for this before” and I say not this issue specifically, but he is aware of my history.  “OK, I will give him the message.”

It is Wednesday – I am wondering when she is going to give him the message?!  No, I didn’t call back on Tuesday because I feel awkward.  I know I don’t need to be seen as he will just give me a note for PT.  I don’t have a way to get to his office as I don’t drive and people aren’t on call 24/7 for me.  Am I unreasonable to think that I was just trying to make this easy for everyone?  The people at PT would have called me if they received the fax.

Today is Wednesday and I am still in substantial pain.  But as with Lyme, I try to compartmentalize it and put it to the side.  If I let myself think about it, I am really angry that I did not even get a call back yet saying that I need to be seen by the doctor.  I try not to think that way as it just leads me down a path to all the things I am angry about thanks to what Lyme has taken from me.  There is so much anger, guilt, sadness and loss associated with this dreadful disease that I keep that as far down inside as I can.  I am afraid of what will happen if I let it to the surface.  That is for another blog.  I am also happy for everyone I have in my life and for the sun shining and only getting up once during the night to use the bathroom! 

Well I seem to have gone off point again.  It is Wednesday.  It has been a week of severe back pain.  I don’t do ERs for back pain.  I will email the office when I finish this post.  How will I word it?  I’m not sure.  I know how I would like to write it, but that is the stuff I keep tucked down deep.  I would have reached out to my Lyme doctor, but she has been on medical leave.  Why am I making excuses – the doctor should have called me back last Friday and I should not be feeling guilty about bothering them.  Here goes…………


Relapses are the pits September 24, 2013

Filed under: Uncategorized — iammorethanlyme @ 6:19 pm

Relapses are the pits.


Relapses are the pits

Filed under: Uncategorized — iammorethanlyme @ 5:58 pm
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I having been missing from life in general for the past few months.  I have run from social media rather than reach out to the friends I have made the last few years.  I have had the pleasure of entering “peri” menopause for the past six months, which has just added to the party in my body.  Holy hot flashes, anxiety like nothing I experienced before and more fatigue!  Ain’t that peachy.  The hardest thing for me is the emotional roller coaster.  I had pretty much kept it together through this heinous journey called Lyme, but WHOA, thanks menopause for making me cry because I threw out an uneaten ear of corn on the cob…are you kidding me?

I didn’t shed a tear through spinal taps, EMGs, nerve conduction tests, autonomic nervous system tests and the daily pain of chronic lyme.  An ear of corn?? I didn’t even want it.  Dave has been unfailing in his sympathy as he watches my brain flip a switch and off I go to another personality.  He has had to endure the fact that I have found the best way to get out of my foul moods is to scare the piss out of him.  I laugh till I cry while I usually hear a deep breath and something creative from his lips, like, “blow me”.

I do this all the while knowing that he has been dealing with atypical migraines for over six months that require medication and physical therapy.  I do this while he is in the throws of quarter-end at work and is currently working 12 hour days till the end of the month.  I do this because I am afraid of what I might do or say if I let the bad mood “out”.  Dave graciously accepts this behavior.

Lyme brain is what we lymies refer to as the reason why we act the way we do at times.  There is confusion, short-term memory loss, cognitive issues and a list to long for right now.  Menopause brain is a whole different creature.  If you combine the two, you get me, a person who is looking for things I haven’t lost yet.  A person who wants to do something productive, but can’t get out of her own way.  It is a good day if a laundry gets done from washer to being put away.  It is a good day if I make dinner.  It is a super day if I do more than one thing. 

I had a five week period of pure happiness mid-April till mid-May when my Bartonella was being destroyed by IV Rifampin.  I was up by 6 in the morning and out the door for a walk; something I had not done in over eight years. Then my PICC line started to leak and I had to get a new one in my other arm.  The new PICC line caused an unending skin infection that caused me to have a nurse visit every few days to do a dressing change as my infection was just weeping through the insertion site of the PICC line.  Between the leaking line and the skin infection, I was feeling worse mentally and physically.  Then Big Pharma had to add to the misery by putting IV Rifampin 600mg on backorder.  How dare they?  I don’t know how they sleep at night knowing that people are suffering because you don’t feel you are making enough profit when a drug is generic.  The backorder wasn’t for a month or two – it is until January 2014.  So we made the decision to remove the PICC line as I had the skin infection and the drug wasn’t available.

This happens with many people that are sick with many diseases.  The government and big pharmaceutical companies are in bed together.  The corruption is disgusting.  Lyme is a whole different animal in the fact that it is still not recognized as a disease.  We are lied to by the government, CDC, IDSA, and doctors who refuse to name this as a disease.  That would require insurance companies to cover it.  This would allow doctors who believe in Lyme and it’s co-infections to adequately treat patients without the fear of being taken to court.  This would make treatment local and not make us drive to another state for treatment.  The cost is not just in money, but in the stress the trip takes on the Lymie and, in my case, the fact that I am unable to drive (yet) and depend on other people to help me.  I have wonderful people!

Oh, look, off on a rant I go.  Not really a rant as I don’t have it in me lately.  So to wrap up this odd attempt at blogging again, let’s just say that I don’t have the mental ability right now to read all the incredible information that is put on Facebook by people dedicated to fighting with everything they have to bring Lyme to the forefront of the news, where it belongs.  I plan on re-entering that part of my life.  I want to contribute; I want to be there with information and support for other people suffering with the endless disease.  I did do that for a long time.  Right now I need quiet.  I need to stop all these voices running around in my head telling me what I should be doing and making me feel bad all the time.  I need my friends who might read this to know that I am keeping you in my prayers and hoping you are fighting as hard as I am.  Thank you.


One Ringy Dingy, Two Ringy Dingy….. March 12, 2013

Filed under: Uncategorized — iammorethanlyme @ 8:18 am
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After four rings, it went to voice mail.  I quickly left a message and wondered if it would be returned.  I had no right to expect it to be and if it was going to be returned it could be anytime in the future.  Twenty minutes later my phone rang…………

“Hi Kath, it’s Dad.  I’m so happy to hear your voice.  I can’t talk right now as I am at work, but I had to call when I saw it was you.  Can I call later?”  “Whenever you get a chance, Dad, I’m home all the time.”  “OK, I’m so glad you called.  I love you so much. Bye”  “Love you, too, Dad, bye”

That was my first conversation with my Dad in over a year.  In fact, the last time I saw him was at my Mom’s wake in November 2011.  I wasn’t sure that he would even show up, but something told me he would be there.  I even had some old pictures to give him if he showed up as I realized that when my parents separated when I was 12, he didn’t get any photos.  My sisters and I had been going through the old albums while we spent a lot of time with Mom in her last few weeks.  There were so many pictures of his side of the family, that I felt I had to take a few along with some holiday photos from when we were young.

At my Mom’s wake it was quite busy and I was at the head of the line, even though I have an older sister, but I was basically stuck there with a chair and my walker.  I caught him out of the corner of my eye the minute he came in.  He made his way through old neighbors and friends and nervously came through the line.  My older sister, Anne, and her family have kept in touch with him so he was relieved she was right there to greet him.  The next obstacle was my younger sister, Donna, who had so much baggage from my parents that it wouldn’t fit on a jumbo jet.  My sister opened her arms wide and hugged him tight.  That’s when he started to cry.  He moved onto John, her husband, then Dave who hugged him and I was the last one before Mom.

I moved the walker out of the way and held onto him as I felt his skinny body shaking and could smell the cigarette smoke on him.  I whispered in his ear that I had something for him and would give it to him when he was leaving.  I took him to re-meet his granddaughters and meet their boyfriends.  I left him alone at the casket.  He couldn’t stay – it was too much.  So I reached in my bag and pulled out a package of pictures and handed it to him saying, “I have a lot more that you need to catch up on.”  He cried some more, I said I would call him soon and he left.

I did call him, but it was the week after Christmas 2012!  I know I didn’t have the best of years, and it’s not like I didn’t think of him.  It’s just that this is my BIGGEST flaw – I despise making phone calls (and I get that from him).  Just to add in a little more info here, before my Mom’s wake, the last time I had actually seen him was seven years ago at my nephew’s high school graduation party!  Oh, he lives 1/2 hour away from me.  I have been in this house for 14 years and he had never been in it.  So, yes, there is history, there is doing what you believe is best for your family, and there was the lifting of any old anger from these family members once my Mom passed.

My father holds no ill will that it took me so long to call.  He is just happy as a “pig in shit” that I did.  He is 74, recovering alcoholic, smokes like a fiend, has tattoos, has a pierced ear and loves the opposite sex.  He works at a home and garden store fixing machines and loves it.  He is not mad that his life did not turn out as he expected, which was to retire to St. Thomas with my stepmother (who died of cancer ?8 years ago).  He is not mad that he is tight on money after all those years preparing for his future and having the stock market crashes kill those dreams.  He is Dad, Papa Don, as happy to be telling jokes as he is to be listening to stories.

We have talked a few times and he has finally seen the inside of my house.  We went out to lunch that day and talked for over two hours.  We talked the day of the blizzard “Nemo” where he was telling me that he was going to be headed out after noon to drive around as the government officials in Massachusetts had said to be off the roads by then.  He doesn’t care for our leaders and he doesn’t like being told he can’t do something.  I owe him another phone call as the rest of February was pretty rough for me.  In fact, I am going to call him at noon today and leave a message if I have to because I know he will get back to me.

Life is too short to let the past keep you there.  If Amy hadn’t mentioned whether it was okay for her to invite Dad to her wedding, I would have put the call off.  Even though they don’t have much of a relationship, she remembers him going to her dance recitals and being at birthday parties and was being a bigger person than I had been.  Thank you, Amy.  I like having my Dad back in the picture.



With Lyme, all you can do is try March 8, 2013

Filed under: Late Stage Lyme Disease — iammorethanlyme @ 6:30 pm

With Lyme, all you can do is try.


With Lyme, all you can do is try

Filed under: Uncategorized — iammorethanlyme @ 6:28 pm
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I will blog a lot about Lyme as I have been housebound for over 7 years with Late Stage Chronic Lyme and underlying MS (which are basically the same thing once you read enough about the diseases.)  This is just about me, my Lyme and the snow the past two days.

Where I live in Massachusetts, we have been blessed with almost another two feet of snow that the weathermen did not see coming. Four to eight inches was the best estimate.  WRONG.  This storm is still hanging around 36 hours after it started.  Not blizzard conditions, no power loss, just a lot of wet, heavy snow to shovel.  How would I know that, you ask?  Well, let me tell you………..

Yesterday, Dave shoveled before he went to work at 7 am.  I am home as I have mentioned before with my ancient dog, Madge.  Madge is not shy about using the kitchen floor, in the middle of the night, to pee – lovely, I know, but she’s 15 1/2.  The rest of the time she needs to go outside.  By 10 am, Madge needed to go out.  I went to the back door and could barely push the storm door open as the snow was blowing in at the back of the house.  Madge weighs maybe 12 pounds, so as tempted as I was to toss her out into the snow, I knew I could not.  I grabbed my dusty snow boots, snow jacket, grabbed a shovel from the front steps and started digging my way out the back onto the wooden deck and Madge followed behind me waiting to get down the stairs.  Stairs are not my friend, wet wooden steps are just begging for me to fall down them.  I cautiously cleared the steps to make a passage for the dog.  There was pure joy as she relieved her full bladder and happily ran back in.  No worse for the wear, I headed to the front steps to see what I could do to get the lazy ass mailman to stop and deliver my mail.  I don’t like my stairs, no one likes the stairs to this house as they are awkwardly spaced in length, width and height and could cause an injury if you misstep.

I cleared as much as I could before I started hearing my heartbeat in my ears and could feel some rumbling in my chest when I drew a breath.  This was in less that half and hour!  In I came and as I was taking off my boots, I heard that mailman (bastard) drive right by!  Just like putting salt on a wound.  I sipped water, took deep, slow breaths and had a cool cloth for all the sweat that was now pouring off me – YEAH, DETOX.  My brain is yelling at me that I know better than to do any type of cardio work as last time I did, I ended up relapsing and am still coming back from that a year later.  When Dave came home, I played it down like it was no big deal, I didn’t do much, etc.  He worries enough.

Yep, there is more.  Today dawns with an unexpected dumping of overnight snow and Dave is out there again trying to shovel out to go to work.  He was concerned about his Dad, who lives close by, as at 85 he still goes out to shovel.  I knew Dave would drive by the house as he headed to work and sure enough his Dad was out there with a shovel.  Dave came home as the driving was lousy and he redressed in the snow clothes I had thrown in the dryer and headed over to his Dad’s house.

While he was gone, the snow continued to pile up here at a rapid rate and again the back door was blocked.  Okay, I can do this.  I will just go slowly.  I will wear gloves this time.  I will put the house phone and my cell phone in my coat pockets.  Out I go, with Madge right behind me.  This snow was heavier, throwing it over the railing was difficult.  Using my right side more as my PICC line is in my left arm was causing pain in my lower back.  I didn’t clear the steps this time, just pushed the snow down so it was like a slide.  This was fine with Madge and she was right back in the house.  Hmmmm – should I?

I decide to go back to the front steps again as I was expecting medication in the mail and the jerk didn’t stop yesterday.  I had heard the mail truck making it’s run down the opposite side of the street, so out I went.  I could only go so far on one set of steps, but the ones that run right along the front of the house, I cleared all the way down.  I am just going to go back up them when I hear the truck coming and then I see it passing by – WTF?  I hollered, “HEY, gotta any mail for me?”  He stopped, backed up and said that they are not supposed to stop if the stairs aren’t cleared.  I said, “I’m not supposed to shovel because I am disabled, but I am looking for medication that was supposed to come in the mail yesterday.”  He checks and lo and behold, there is my medication.  Did I say he was a lazy ass.  I grab my mail and medication and head into the house feeling successful.  Now inside, I am dizzy, wheezing and my heart is pounding.  I repeated yesterday’s process to calm down.  After a good five minutes, I check my heart rate and it’s 148 – that’s like an aerobics class.  Great, Kath, just great.  Am I trying to set myself back?  Absolutely not!  I am trying to do what I thought I needed to do for me.  So I accomplished that as I got my medication I needed, but now my back hurts and my forearms are tight.  I joke that at least I still have muscle somewhere, but the heating pad is calling me.  Dave comes home about 15 minutes later and says, “you are beet red – did you just come in?”.  Yes, yes I did. He worries enough.

Lyme will be with me always and I am just trying to do what needs to be done when I have to and sometimes I will pay a price for it.  Hopefully, muscle fatigue and a little pain is the worst of it this time.


TA DA March 7, 2013

Filed under: Late Stage Lyme Disease — iammorethanlyme @ 7:11 am
Tags: , ,

Look at me, only 12 hours since the last post!  Things to be happy about already:  my dog did not pee on the kitchen floor, it’s snowing, I don’t have to shovel or go anywhere today and I love my haircut!  Just a simple gal.

I’m a little disappointed I didn’t sleep better last night as that was my last Vicoden from my root canal a few weeks ago and I had been very happy to sleep a solid six hours for the first time in YEARS.  It’s my own fault (my mind’s fault really) as my PICC line is irritated looking and that makes me nervous which makes me think that maybe something is up again with the tooth that had the root canal as this is how it started last time.  Big time infection in my mouth was the result even though I was premedicated with 2000mg of Amoxicillin, had antibiotics placed in the site of the procedure and was/am on 500mg IV Azithromax daily.  Of course, I don’t have a temperature (it’s at it’s usual 96.2), so I will just put heat on my PICC line site and keep an eye on it.

Oral spirochetes are a bitch, plain and simple.  They invade an injured site in the mouth like a dog with a new bone. The following is an excerpt from a public health site regarding just how oral spirochetes attack (I like their reference to multiply like rabbits more than a dog with a new bone – so be it):

A focal infection is a local infection that expands to incorporate the whole quadrant, then the whole side of the mouth and eventually can cross the midline to incorporate the other side. Basically, the theory says the oral cavity is able to generate particularly nasty toxins that poison the body when you have had a root canal or a tooth extracted. Most dentists still do not understand the Focal Theory; it was studied more in Europe than here. Dr. Weston Price’s great contribution was the discovery that focal infection bacteria are polymorphic, meaning they mutate and adapt and multiply like rabbits in the three miles of dentin tubules that emanate from every tooth. The bacteria become smaller and anaerobic – they can now live without oxygen. They also become more virulent, and their toxins more toxic. Root canals and old extractions are common focal infection sites. 

When you have a root canal, a dead tooth is left in the mouth. The dead tooth lacks a blood supply to its interior. Antibiotics circulating in the bloodstream have no way to penetrate this dead tissue. Over time, the material packed inside the dead tooth shrinks a bit. Now bacteria come in and morph. The tooth has both bacteria and toxins as a result of being dead for so many years and these toxins are infiltrating into the bloodstream. 

In extraction sites, the healing may not take place correctly. If the healing is incorrect, the space can fill in with fatty tissue, dead bone, improper bone, or it can fill in with infected material. All of these processes are wrong and the organ associated with that extraction site will always show this improper healing. The remedy is to clean out the socket, debride it, and remove the ligament that holds the tooth in as well as the dense bony lining of the socket. The other important factor is cleaning up the quadrant (at least) of the mouth where the extraction was performed – cleaning up all metal and any other extraction sites. This is the best way to assure proper healing from extractions. 
Toxins from focal site infections are highly virulent and they tend to go to the organ associated with the meridian upon which that tooth lies. Over time, the toxins’ assault will change the genetics of the organ. However, it has been found that upon proper extraction of a dead tooth and proper treatment of an extraction site, the organ will return to its normal genetics. Bob Jones, an engineer, recently did substantial genetic testing which demonstrated the ability of organs to right themselves.

Did you get all that?  It’s funny as I had a root canal done a few years back before I realized any of this and ended up with a super infection and the molar had to be pulled.  I was put on strong antibiotics, but a few days later I was back in as I felt bone sticking out.  Just as it states above, my jaw bone had protruded and I had the great pleasure of having that carved out.  My mother always said I had to be different.

So now I am left to wonder if I should have just had them pull this molar, too.  Am I just in for more trouble leaving a piece of a dead tooth in my mouth covered with a crown?  I guess I will find out on March 19th when I go back to have the permanent crown put on and we see how the site looks at that time.  Of course, I have a nice metal filling in the molar next to it that probably isn’t helping either, but money is always a factor even with dental insurance.  I am going to try and hold onto this tooth as I am rather attached to them and don’t want another gap in my mouth.  Wish me luck and hope you ate before you read this.  Bet you want to go brush those teeth again, don’t you?